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Brainwaves needed: Aspergers books, tantrums/medicine refusals

25 replies

drnooo · 19/04/2012 09:51

This is my first post, so please be gentle!

We believe DS1 (5) probably has Aspergers, and we're beginning diagnosis. I'll let you know how that turns out in about a decade then...

Meanwhile, we need help!

First, does anyone have any books to recommend on parenting kids with Aspergers? I saw the thread about Kathy Lettes. Anything else useful out there? Even if he turns out to be elsewhere on the autism spectrum, or different in other ways, the experience won't be wasted. (Plus I'm a uni lecturer, and one of my current students has aspergers, so learning is good.)

Second, and of more immediate concern, DS1 is now refusing to take a vital medicine he has for his constipation/compaction problems.

Short version: the usual parenting approach to tricky situations sooooo doesn't work with DS1. Mega-tantrums and militant refusals which (a) make me think he should become my trade union's next leader and (b) make getting him to do necessary but for him unpleasant things is... argh!

So does anyone have any tips on dealing with overcoming refusals to take meds, or to do other vital but everyday things Aspies find tricky?

Any thoughts really welcome, and if you read this, thanks and have a good day.

Longer version with bit more background for anyone with time to read: DS1 doesn't like pooing due to hypersensitivity and smell issues, which has caused havoc with his bowel, stretching it basically, and it'll take months to go normal. But the meds have made an amazing difference. He's 5.5, and for the last two weeks has had unpooey pants for the first time in his life! He even managed not to leak wee yesterday, which verged on the miraculous. We made as big a fuss of him as we did DS3 yesterday, who has basically toilet trained himself, aged 2.5. Which apparently some kids can do. Who knew. But I digress...

The med is one you dissolve in drink. Started out in OJ and lemonade. Then he could taste it (his senses of taste and smell are incredibly sensitive). So we switched to just lemonade, which was alright for two weeks. Then it wasn't. So we added a spoonful of sugar. OK for a few days. But he can still taste the salty meds, and this morning we had a 2-hour before school "tantrum" (if it is a tantrum, given his difference) where he wouldn't take the meds. We had to give up in the end, although thankfully he'd had quite a bit of it.

But we have to give another dose at tea time tonight. And tomorrow x 2. And so on. For months.

And it matters because he'll end up where we were before this medicine if we're not zealous: pooey pants, ultra-sore bum, screaming when it takes two of us to wipe sensitive areas, DW and I losing our sanity, or whatever remains of it, while DS2 and DS3, amazingly, play happily and do all the things we never realised kids could do by themselves until they began to hit milestones DS1 bypassed on his way to becoming a vulcanologist at 5 (his current obsession is volcanoes, not Mr Spock).

The above reads light-heartedly. But I was almost in tears when I finally had to drive to work this morning. He wasn;t waving goodbye as usual from the front window this morning. He was screaming, banging his fists, crying out for me. I left the car, door open, in the middle of the road and ran back in. It wouldn't help, I knew, but I just couldn't not try. He leapt at me and clung. Eventually, DW had to intervene to separate him from me as he screamed "Daddy, don't leave me" etc, shaking against me with rage, confusion, and his unbendable willpower. I left with my inside torn to rags.

If you read to here, thanks so much for your time, and have a good day.

OP posts:
Ben10NeverAgain · 19/04/2012 10:03

Hi DrNoooo

It sounds like you are having a tough time at the moment, We have gone through the assessment process ourselves for the past 18 months and got an ASD diagnosis last month for our 6.9 year old DS.

Firstly there are loads of good books:www.amazon.co.uk/The-Complete-Guide-Aspergers-Syndrome/dp/1843104954/ref=sr_1_1?s=books&ie=UTF8&qid=1334825956&sr=1-1this, as well

I have to take Laxido (similar to Movicol) myself for constipation and I agree with him, it is revolting. THe only way that I have found I can tolerate it twice a day is to buy the orange juice with bits. Half a glass of juice and then mix the stuff in. I really can't taste it at all with the orange juice with bits and the bits apparently are also good for consipation!

Hope this helps a bit. There are loads of people with great information who will be along shortly I'm sure.

drnooo · 19/04/2012 10:33

Thanks for the reading tip Ben10NeverAgain, and also for the different OJ idea. Bits won't work. (DS has a serious issue with bits, mind, but maybe we just need better quality smooth juice.)

Congrats too on going through the diagnosis process with your DS, and good luck with it all.

OP posts:
wibbleweed · 19/04/2012 10:38

Hi DrNoooo,

I'm in a similar situation with you in having a 5 yr old DS with AS. I'm afraid I can't help you with the meds side of things, but oh yes, mine is stubborn, meltdowny and sometimes downright impossible!

On the diagnosis side of things, hold in there, keep chasing and it might not take so long as you think. This time last year we were just about to have our first appt with the developmental paed. She said he's probably got AS but that we don't need a diagnosis because he's HF and will be fine. Being naive and somewhat shellshocked I bought it, but then started to wonder... To cut a long story short (and following further reports from SALT, OT and EP) I got the GP to refer directly to CAHMS. First meeting in Nov - then 3 more in Feb/March - and got the formal diagnosis 2 weeks ago. Between each one things went quiet though and I had to keep ringing and asking 'what next?' So it pays to be a bit annoying!

I'd love a book with all sort of tips for dealing with behaviour for young kids with AS/HFA. Lots of them seem to be pretty heavy on the academic side of things, which is fair enough - but I want hints and tips!

Hope things start to improve - and hang in there...

WW x

drnooo · 19/04/2012 11:12

Thank you for your kind message WW. Ben10NA's message earlier gave me an Amazon link that revealed this book on parenting and aspergers, which has had good reviews, and includes 200 top tips or similar in the subtitle. Sounds like a really useful Hitchhiker's Guide. And thanks too for the advice on hanging in there, pestering, and trying multiple channels re. diagnosis. Given the battle involved in just getting a non-emergency appointment at our GPs - don't get me started - I can tell this is going to be a long, armour-plated haul.

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coff33pot · 19/04/2012 11:12

Amazon have a great collection of books. I have Tony Attwoods Complete Guide to AS and it is very informative and full of knowledge. I also have Ten Things Every Child with Autism Wants You To Know which I enjoyed as it gave me insight to how children tick inside.

Tony Attwood also has one as a guide to parents and proffessionals which is more condensed and I am saving up to purchase that too.

Out of Sync Child I found excellent for sensory issues.

Re the Meds all I can think of is setting it in jelly? if he likes it. With Anti B liquid I have made mini mouse dishes with it in to get it down my DS.

I hope you have a smooth run diagnosis wise and I found this board a good place to be during the process for advice, support and a good rant to get things of your chest :)

Its hard I know and my heart goes out to you and DW for the morning you have had. Hope tomorrow is a better day for you.

drnooo · 19/04/2012 11:12

P.S. Sorry, here's the link: www.amazon.co.uk/Parenting-Child-Asperger-Syndrome-Strategies/dp/1843101378/ref=pd_sim_b_2

OP posts:
Ben10NeverAgain · 19/04/2012 11:30

The smooth fresh orange juice might do the trick as well drnooo. It is £2.50 for 3 in the fridge in Sainsburys. It still tasted revolting in normal UHT OJ to me so I'm not surprised if he has sensory issues that he wouldn't tolerate it.

drnooo · 19/04/2012 11:35

Thanks for your very kind message Coff33pot - see you here for a rant in the future, no doubt :O - and for the vote of juicey confidence, Ben10NeverAgain.

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Ineedalife · 19/04/2012 14:50

Another person who understands what you are going through. I dread my Dd3 needing medicine as she has extreme issues with taking it.

I hope the orange juice works and good luck.

Oh and welcome to the board, keep coming here for support and adviceSmile.

SallyBear · 19/04/2012 14:58

My Aspie DS is very reluctant to take meds and he is 12. Two winters ago he had pharyngitis and something else - anyway he wouldn't take the antibiotics as they were the revolting banana flavoured ones. A friend suggested (as he kept vomiting as soon as he tasted it) to give him a spoon of ice cream before and after the medicine. The cold numbs the tastebuds. It works.

drnooo · 19/04/2012 15:16

What a great idea about the numbing with icecream. Think I might test drive that one myself tonight. :) Thanks SallyBear, and thanks too Ineedalife for the welcome. We (DW and I) have zero support at the moment (grandparents too far away to chip in, and anyway - well, you can imagine...), so this is so helpful to us. Really appreciated.

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zzzzz · 19/04/2012 15:30

This reply has been deleted

Message withdrawn at poster's request.

drnooo · 19/04/2012 15:48

It's in white powder form, zzzzz. Would it be wrong to encourage him to snort it? Probably. I guess we could bake it into something (Movicol Brownies?). Kidding x 2. It has to be diluted into watery form, but someone suggested Jelly earlier, which sounded like a really good idea to me, if the flavour is strong enough. Thanks for your post. I really appreciate the advice of people "up close and personal with the realities", as you write.

OP posts:
zzzzz · 19/04/2012 16:08

This reply has been deleted

Message withdrawn at poster's request.

SallyBear · 19/04/2012 16:13

But don't be surprised if they sick it up Sad My DS4 ASD, cannot take meds orally (normally), so it's mixed into strong Ribena.

SallyBear · 19/04/2012 16:14

Meant to say. DS4 got phobic about syringes. Hence the sneaky route!

zzzzz · 19/04/2012 16:17

This reply has been deleted

Message withdrawn at poster's request.

Ben10NeverAgain · 19/04/2012 16:27

Oh, it's horrid in Ribena I tried

SallyBear · 19/04/2012 16:51

Ben - DS4 loathes pain meds. So it's in ribena or a smoothie. The same goes for antibees. I get the capsules and give him half a capsule in a drink. It's THE only way! The ice cream/ice lolly route is worth exploring. Wink

drnooo · 20/04/2012 08:43

Coff33pot: made orange jelly last night with movicol in and, after an initial tantrummy refusal this morning - with super logic ("but I can't drink jelly!") - was OK with idea. And he ate it all up. Combines the numbing of tastebuds suggested above with the strong masking taste of orangey things, also suggested, so well worth a shot. Lollies also a way to go.

And zzzzz: it's obviously not just your kids who are brave and stoical. Clearly, they inherit those lionhearts from somewhere.

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Ben10NeverAgain · 20/04/2012 08:50

Well done Drnoooo!

Sally - It's me that has to take this horrid stuff twice a day and I have to say that to start with I was a real wuss! Blush

SallyBear · 20/04/2012 09:48

Oh poor you Ben!! It's nasty I know. Poor DD has to take vile tasting prophylactic antibees three times a week for life! She is such a trooper. They taste disgusting. Sad

alison222 · 20/04/2012 12:23

Oh yes super strong sense of taste - I recognise that in DS. When we have had to give antibiotics - super bitter and foul, it is usually with spoon in one hand and then a piece of chocolate or other super sweet sweet in hand to put in as soon as the medicine is swallowed to take away the taste.
Over time DS has got better with this sort of thing - you just have to persevere and keep stating that not taking it is not an option.
Also have you tried talking about it at a time when he doesn't have to take the meds and he is calm to explain that a few seconds of a horrible taste are much better than a constantly sore bum?

drnooo · 20/04/2012 12:57

Hi alison222. Yes, we've tried reason. Hoping the penny will drop one day. In the meantime, we'll be smuggling it into a range of foodstuffs and hoping for the best!

OP posts:
Spiraling · 20/04/2012 13:37

Hi,
We use to give ds movicol in any form of drink, but mainly orange juice.
Also took us a while of playing to find the right dose, paed said two sachets aday, but we found it two much and keep changing it after that.

I readly liked by Joshusa Muggleton (his aspergers):
Raising Martians - From Crash-Landing to Leaving Home: How to Help a Child with Asperger's Syndrome or High-Functioning Autism [Paperback]
Not to academic like some and it made alot of sense, and so ds on occasions (his HFA).

good luck

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